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Jay Lake
Date: 2013-12-17 07:43
Subject: [cancer] Talking about dying and death
Security: Public
Tags:cancer, child, death, family, health, personal, radiantlisa
Yesterday, Lisa Costello, Dad and I met with my palliative care doctor. There was some discussion of my sleep issues, now essentially gone because I am off the Regorafenib. We also told them about our efforts at clinical trials. They were less interested in the medical details than in how I was experiencing the process. They talked about people who sometimes had better outcomes without entering chemo or trials at all. I pointed out that I had to be doing something or I'd go nuts.

Also had a long discussion of hospice options and how the place and manner of my death would impact [info]the_child. They provided a list of names of local hospice providers they held in high regard. Naturally, when I checked later, none of these providers were in-network for my health insurance.

We also talked about the difficulty of predicting life expectancy in my situation. The palliative care doctor said there are two main factors in their experience.

The completely unpredictable factor is when and how some catastrophic event occurs. For example, organ failure, or an opportunistic infection. There's no way to anticipate the timing of such an event, though once it happens, I will likely pass very quickly.

The more predictable factor is rate of change, in effect. As they put it, if I am seeing significant changes in health or functionality that take place over the course of months, I have months yet to live. If I am seeing significant changes over the course of weeks, I have weeks yet to live. When the changes take place over the course of days, I have days yet to live.

Where these two factors intersect, clearly enough, is that unpredictable catastrophic event changing my health literally overnight, or over a day or two. At that point, my remaining life is likely measured in days.

This was both fascinating and sobering, and also one of the most useful descriptions of the dying process I have ever encountered. It neither gives me hope or incites despair, but it does grant me some perspective.

The palliative care doctor wants to continue to see me as I progress through the clinical trials process, every two or three months. I told them we would keep them informed. Our current followups are to check my hospice benefits with my health insurance carrier, figure out which Portland area facilities are in-network, and schedule some site visits. I'll schedule another visit with my palliative care doctor once we know more about my clinical trial schedule.

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User: martianmooncrab
Date: 2013-12-17 19:13 (UTC)
Subject: (no subject)
every two or three months.

tell them you will hold them to those appointments..
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User: a_cubed
Date: 2013-12-18 00:30 (UTC)
Subject: (no subject)
The discussion of which hospices are "in-network" for your personal health care funding body (ugly descriptive phrase but the usual shorthands in use in the US are utterly misleading) rather reminds me of a "death panel". Just saying.
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Jay Lake
User: jaylake
Date: 2013-12-18 00:52 (UTC)
Subject: (no subject)
Clearly you are a Kenyan Muslim socialist who does not understand the superior American market-driven way of dying.
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User: a_cubed
Date: 2013-12-18 01:51 (UTC)
Subject: (no subject)
Indeed, apart from being Kenyan, Muslim or actually socialist(*), that describes me very well.

(*) In British terms, I'm not a socialist. In US terms, well the word is juts a meaningless slur in the US for anyone not 100% in favour of the plotucracy AFAICT.
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Debbie N.
User: wild_irises
Date: 2013-12-18 06:40 (UTC)
Subject: (no subject)
That "unpredictable catastrophic event" part helps me understand what happened with my brother. Which is useful, so thank you.
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